Folate deficiency at 24 years old? - Pernicious Anaemi...

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Folate deficiency at 24 years old?

SLV94 profile image
12 Replies

Hi. For the past two years I have been with a heamotologist because of my folic acid and b12 deficiency. I have had a gastroscopy and colonoscopy recently and all normal and negative for celiac disease.

I don’t know what is causing this.

I eat healthily.

I keep having to have tablets and injections.

The past six months I have suffered terrible mid back pain and was wondering if this is related to a deficiency. X-Ray of my back is normal, showing slight scoliosis.

I’m at my wits end.

Anyone been through the same experience or have any insight?

Many thanks

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SLV94
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12 Replies
Nackapan profile image
Nackapan

One of my grown up children has to have folic acid daily and b12 injections. It was found years after as levels were very very low. Last 15 probably .

Now 30

No reason was found for many years.Like you MRIs clear as was endoscopy.

Not caeliac but is better on a gluten free diet .

Digestion in general a problem.

Also had terrible back problems prior to this . Prolapse disc. Addissons checked for ect ect

HEDS has been diagnosed. (Hypermoblity) After other wrong diagnosis. The usual chronic fatigue fibromyalgia.

Also POTS. I expect the autonomic disfunction is causing the absorbtion issues

Keep going with investigations

You know your body.

Also get the relevant thyroid tests done

List all your symptoms. Have regular bloods done to address defiencies .

I hope you get to the bottom of it. Very complex.

27Protons profile image
27Protons in reply toNackapan

As you mention back pain do you know if it reduces for them with movement?

Nackapan profile image
Nackapan in reply to27Protons

Sine does some doesn't. Different sorts

Sleepybunny profile image
Sleepybunny

Hi,

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Have you been tested for PA (Pernicious Anaemia)?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

"all normal and negative for celiac disease. "

Were you eating plenty of gluten in your diet prior to blood tests/examinations for Coeliac disease?

If blood tests were done, did they do both tTG IgA and Total IgA blood tests?

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Coeliac disease can sometimes present without obvious gut symptoms and more with neurological symptoms.

coeliac.org.uk/information-...

Were you tested for H Pylori infection?

patient.info/digestive-heal...

Any chance of internal parasites eg fish tapeworm. Do you ever eat raw fish eg sushi/smoked salmon?

One sign of potential parasite infection is an increase in level of eosinophils, a type of white blood cell. Result for eosinophils can be found on Full Blood Count FBC (known as Complete Blood Count CBC in US.

Any exposure to nitrous oxide? Nitrous oxide inactivates B12 in the body. Sometimes used as pain relief/anaesthesia in operations.

gov.uk/drug-safety-update/n...

Are you on any medication that may affect levels of B12 and/or folate?

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Also plan to read "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

"I have had a gastroscopy and colonoscopy "

B12 is absorbed in the terminal ileum. It's possible that your gastroscopy and colonoscopy did not examine this area of the gut.

Link about endoscopy

nhs.uk/conditions/endoscopy/

People who have damage to the terminal ileum may have difficulty absorbing B12.

If you're in UK, these documents below may be of interest

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

cks.nice.org.uk/anaemia-b12...

I am not medically trained.

You specifically mentioned mid back pain which is interesting as a few people here have this and as far as I’m aware no one has ever discovered what’s causing it. I have it too and I don’t believe it’s caused by a B12 or folate deficiency. I say that because I was diagnosed with PA 2 years ago and I SI every 2 days and take methyl folate 400 McGregor every day. I also have exocrine pancreatic insufficiency (EPI) and I thought the pain might be pancreatic in nature as I also get the pain under my ribs on occasion. I have a CT, MRI and MRCP and I’m told my biliary tree is clear. The ultrasound of the abdomen showed I had biliary sludge but it didn’t show on the MRI which I find odd. The GI just shrugged! Very unhelpful. I’m having another MRCP so will see what happens. I suggest you have a decal elastase test if you have not had one already. This will show if you’re having any more absorption problems. Then I’d had an abdominal ultrasound and a CT and MRCP.

Not sure that helps you much as you could do all of this and find nothing, like me, and still have the pain. Good luck and let us know how you get on.

27Protons profile image
27Protons in reply to

As you mention you have mild back pain too (does it reduce with movement?) I am currently looking at Ankylosing Spondylitis - nass.co.uk/about-as/what-is. Which is another autoimmune issue and you have 1 (Pernicious Anaemia) you're likely to have others. As I agree its is interesting what going on here.

in reply to27Protons

I dint have ankylosis no. You get a test for it HLA -B27 and I’m negative. I’m taking proteolytic enzymes and that is helping.

Nanc72 profile image
Nanc72

I feel that methyl folate works better for me then folic acid. I stay clear of everything with folic acid in it also. I am gluten and dairy free. It seems to help a lot. I take an organic multivitamin with methyl folate and an extra methyl folate tab. Not a Dr, but it has help me a lot.

27Protons profile image
27Protons

You sound similar to me I’m 24 as I also have scoliosis too and a blood test was negative for celiac disease but I was not eating much gluten when the test was done & they refused to do a endoscopy or another test after I started eating gluten which nearlt hospitalised me.

As you mention you have mid back pain too (does it reduce with movement) I am currently looking at Ankylosing Spondylitis - nass.co.uk/about-as/what-is...

Then have they bothered to test (they probably have not) for nutritional deficiency: Vitamin D, calcium (the parathyroid would be worth doing too), red cell magnesium, Iron (not just ferritin) , zinc, copper, selenium to name a few.

SLV94 profile image
SLV94 in reply to27Protons

Yeah. All tests were normal but my b12 and folic acid come up and down. In January it was 20 (folic acid) and now it’s 2.6.

It’s better with movement my back but worse when resting.

27Protons profile image
27Protons in reply toSLV94

By normal did you see the results or is that what the GP told you as it generally best to be the middle of the range and some GP seem to overlook borderline low. Also some of the minimums are ridiculously low e.g. B12, based on populations studies (without concern to the population being deficient) and some should not be 1 size fits all as Iron is the only 1 I have seen regularly adjusted for gender.

As it’s better with movement if I was you I would look at Ankylosing Spondylitis have you seen a rheumatologist?

Did you make any changes to you diet between now and January?

Ashweb901 profile image
Ashweb901

I'm narrowing in on my mystery, just like yours, that started when I was 25. My age now is 51. I think i have autoimmune gastritis. Doctors require definitive proof, but my history of deficiency, huge red blood cells, now low white cells, iron anemia, high parietal cell antibodies....all adds up.

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